Saturday, November 30, 2013

This Thanksgiving season we highlight Gwen Olitsky in our Faces of PH series.

“The term “caregiver” always felt right and natural. Family is the most important element in our lives, and we care deeply for each and every family member. Nowhere was this more obvious than in our dedication to protecting our children, grandchildren, nieces and nephews and their children from the problems associated with hereditary hemorrhagic telangiectasia (HHT).”

Friday, November 29, 2013

Did you know November is also National Adoption Awareness Month - a time to encourage eligible families across the country to open their homes to children in need of permanent, loving families? Because doctors recommend that pulmonary hypertension patients avoid becoming pregnant due to the risks it poses to mother and child, some patients in stable health consider alternatives to pregnancy, including foster parenting and adoption.

Wednesday, November 27, 2013

This Thanksgiving, PHA staff would like to extend our thanks to the entire pulmonary hypertension community, from patients and families to medical professionals and researchers working to find a cure. It is a privilege to serve you.Please note that PHA offices will be closed beginning at 3 p.m. ET today for the holiday weekend. We will reopen on Monday.

The National Pediatric Research Network Act passed Congress earlier this month and is now headed to the President for his signature. The legislation’s goal is to improve pediatric research, including research of rare and complex diseases. Congratulations to the PHers and all rare disease advocates who spoke out about this important bill!

Thirty million Americans are living with a rare disease. Half of them are children, and one-third of those children will not live to see their fifth birthday. The National Pediatric Research Network Act seeks to change that by creating pediatric research networks at the National Institutes of Health.

The legislation was sponsored by Rep. Lois Capps (D-CA) and Sen. Sherrod Brown (D-OH). In comments about the bill’s passage, Rep. Capps said, “This bill will increase coordination and improve pediatric research – especially research of rare and complex diseases – while developing new treatments to fight them. Children have unique healthcare experiences, treatment needs, and research challenges. While public and private research has come a long way on pediatric diseases over the years, we know that we are still far behind on important diagnostics, cures and treatments for far too many ailing children. We owe it to … every parent to do what we can to find treatments and cures for illnesses in children.”

Together with Rep. Kevin Brady (R-TX) and Sen. Bob Casey (D-PA), Rep. Capps is also a sponsor of the Pulmonary Hypertension Research and Diagnosis Act. She is pictured above speaking at our Advocacy Day in September.

Tuesday, November 26, 2013

For Caregiver Appreciation Month we’d like to highlight a PH Journey story from a caregiver.

"I try to stay positive if for no other reason than for my daughter. I will always be here for my daughter and will do anything that I can for her … Whatever is in store for her future I am right there with her."Read Jane’s Caregiving Journey

As Pulmonary Hypertension Awareness Month is nearing a close we are inching our way to 10,000 Likes on our Facebook page and 2,000 Followers on Twitter. Help us get there by sharing our Facebook page or Twitter handle @short_of_breath and your connection to PH with everyone you know and ask them to Like PHA's Facebook page or follow our tweets!

If you get us to 10,000 Facebook Likes or 2,000 Twitter Followers, the PHA staff will reward you with a video of us doing the chicken dance. Don't miss this opportunity to get the PHA staff to make total fools of ourselves!

Join us for a unique opportunity to hear from pulmonary hypertension experts considered to be among the founders of the modern PH field! This joint PHA Classroom and PHA Online University event is for medical professionals and patients alike. Dr. Stephen Mathai of Johns Hopkins University School of Medicine will interview our panel of pulmonary hypertension experts about the evolution of our understanding of the mechanisms and physiology of PH.

PANELISTS

Bruce Brundage, MD, St. Charles Medical Center - Bend

C. Gregory Elliott, MD, Intermountain Medical Center

Lewis Rubin, MD, University of California, San Diego, Thornton Hospital

Monday, November 25, 2013

It's Pulmonary Hypertension Week at the American Thoracic
Society! Join us today at 3 p.m. ET/12 p.m. PT for a
webinar on Drug and Toxin Associated Pulmonary Arterial Hypertension. Dr. David S. Poch of UCSD Medical Center will talk about anorexigen, or appetite suppressant, associated pulmonary arterial hypertension (PAH); some of the newly implicated drugs such as the cancer drug dasatanib; what we know about PAH and stimulants used to treat ADHD; and methamphetamine associated PAH.

Portopulmonary hypertension, or POPH, is a type of pulmonary arterial hypertension (PAH) that occurs as a result of advanced liver disease. This disease has the same characteristic symptoms as those found in cases of PAH that are not associated with liver disease.

Those characteristic symptoms of POPH include blood clots and other changes in the blood vessels of the lung. Symptoms the patient may notice are similar to those associated with classic PH, and include shortness of breath and limited ability to tolerate exercise.

Saturday, November 23, 2013

Two days of celebrations are being held in Santiago, Chile for this year’s Latin PH Day. A Leaders’ Summit was held yesterday, with the main conference today. The conference is featuring educational, psychosocial and inspirational speakers from throughout Latin America, and is being co-hosted by the PH Latin Society and the newly formed Chilean association, HAPCHI.

About 15 to 20 percent of people with HHT have at least mildly elevated pulmonary artery pressures, which means they either have or are developing PH. HHT patients can develop PH in two ways and the differences are significant.

Friday, November 22, 2013

PHers around the world, unite with us this PH Awareness Month in our efforts to raise awareness about the need for early diagnosis of pulmonary hypertension. Steve Van Wormer, a PH parent and PHA board member, converted our "Sometimes it's PH" video for countries around the world. Watch and share these videos in your country and across the globe!

“We support PHA for three important reasons. One, PHA has been a great source of information for our family, two, they continue to increase awareness about PH which is so important for a rare disease; and three, PHA is bringing together a community of individuals invested in fighting this disease and hopefully someday finding a cure.” – Hari Srinivasan

On Tuesday, Dec. 3, the Pulmonary Hypertension Association is participating in the second annual Giving Tuesday. Giving Tuesday was added to the holiday shopping weekend after Thanksgiving as a way for people to give in the true spirit of the holidays. As you do your holiday shopping, whether you’re starting on your Christmas shopping, doing last minute Hanukkah shopping, or have a birthday to celebrate, we encourage you to give the gift of support for the programs and services offered here at PHA.

This year we have created the Catalog of Hope with examples of the programs and services your gift will support. The first $25,000 will be doubled thanks to a matching gift from Actelion Pharmaceuticals. Help us make the match.

Pulmonary hypertension is an increasingly recognized complication of sickle cell disease (SCD). Studies show that approximately 30% of screened adult patients with SCD develop mild PH in adulthood. In 10% of patients, the PH is more severe. Recent autopsy studies also suggest that up to 75% of sickle cell patients show changes in the lung tissue at the time of death, indicating the existence of pulmonary arterial hypertension (PAH).

In the past day, researchers from the sickle cell center at Georgia Regents University announced through a press release that they have found promise with pulmonary hypertension drugs for turning down the inflammation and blood vessel constriction that results from the imbalance of nitric oxide and endothelin. Read the article

Share these resources with the people you know who have sickle cell disease:

Thursday, November 21, 2013

This Nov. 28 is one of the biggest events of the season for the Spanish association Fundación Contra la Hipertensión Pulmonar: their annual gala. The gala draws PH community members, medical professionals, and celebrities from across Spain. This year the gala will highlight FCHP’s research initiative Project ENPATHY, which hopes to improve early diagnosis and help find a cure for PH.

We continue Associated Disease Week with shining a light on lupus and pulmonary hypertension.

Robert Schilz, MD, of the University Hospitals of Cleveland says that 5 in 1000 lupus patients develop pulmonary hypertension. If you have lupus, take a look at this video to learn more from Dr. Schilz about lupus and pulmonary hypertension as well as two patients living with both diseases, Anna Bower and Veronica Elaine Lobato. Veronica shares that she was told to put her affairs in order, but she is still here 13 years later. "There is hope," she says.

Wednesday, November 20, 2013

Caregiver Appreciation Month may only be once a year, but PHA has resources for caregivers year-round! Here are just a few of our top picks:

Just getting started? Sign up for PH Ready Caregivers, a self-study curriculum that covers all the basics of loving someone who has PH.

Need a listening ear? Our monthly Caregivers Telephone Support Group brings together PH caregivers from across the country to share strategies and experiences caring for an adult with PH. Sign up for a monthly reminder! www.PHAssociation.org/TelephonePostcards/EmailAlerts

What does that mean, you ask? Dr. David S. Poch of UCSD Medical Center will talk about anorexigen, or appetite suppressant, associated pulmonary arterial hypertension (PAH); some of the newly implicated drugs such as the cancer drug dasatanib; what we know about PAH and stimulants used to treat ADHD; and methamphetamine associated PAH.

Please join us and share this with anyone you know who may be affected.

We continue Associated Disease Week by highlighting congenital heart disease. We encourage you to share this information with friends and family you know who have CHD.

As reported by the American College of Cardiology, congenital heart disease is the most common type of birth defect, affecting one out of 110 babies born in the U.S. Congenital heart disease can lead to a number of health issues, including pulmonary arterial hypertension (PAH). A recent study in the European Heart Journal aims to standardize treatment and improve outcomes for patients with PAH associated with CHD with ten steps for optimal treatment. Read the article

The Pulmonary Hypertension Association has a community of patients who have pulmonary hypertension and other diseases that you can connect with, including Colleen Schnell who has PH & CHD and is an online support group chat leader. Watch her story below or on YouTube.

Tuesday, November 19, 2013

Barb Van Epps used PHA’s Awareness Month template press pitch to get her story in the news. If you want to talk to a reporter about pulmonary hypertension, but aren’t sure what to say, adapt PHA’s template press pitch and email it to local reporters.

The ability to attend PHA’s 2014 International PH Conference and Scientific Sessions in Indianapolis, Ind. June 20-22, 2014

More than that, you will be part of PHA’s community of hope; united with other patients and families like you. Being part of the PHA family is an invaluable resource for many in the PH community, and one you don’t want to miss out on.

COPD & PH Webinar
Tuesday November 19, 2013 at 2 pm ET
November is COPD Awareness Month as well as Pulmonary Hypertension (PH) Awareness Month. Learn about PH in the setting of chronic obstructive pulmonary disease (COPD) at this webinar for patients. Dr. Sonja Bartolome, a pulmonologist from the University of Texas – Southwestern, will provide an overview of PH symptoms in patients with respiratory disease, appropriate testing for COPD patients with suspected PH, and treatments for patients with lung disease-associated PH. RSVP and share!

This week in PH Awareness Month we are highlighting diseases associated with pulmonary hypertension. Today we feature sleep apnea.

The 2004 American College of Chest Physicians (ACCP) consensus panel found that pulmonary hypertension occurred in 17 percent to 53 percent of individuals with obstructive sleep apnea (OSA), and a review from Johns Hopkins found that 82 percent of patients with pulmonary arterial hypertension (PAH) had underlying sleep-disordered breathing.

Check out the following resources and share them with your friend and family who have sleep apnea.

Sunday, November 17, 2013

Diane Ramirez, a patient and PHA board member from North Carolina, and PH patient, Janet Mabe, did a Unity Miles walk for the Race of Our Lives leading up to Awareness Month. They leveraged the publicity they garnered to also get Awareness Month coverage in the Thomasville Times, the Highpoint Enterprise and the Lexington Dispatch.

Diane received 28 Facebook messages in response to just one of these articles, including someone she sees on a regular basis in her neighborhood who lost his mother to PH but had no idea there were others in his community with the disease. Diane also got her local Ruby Tuesday to donate 20% of their proceeds from a day and a local bakery to frost their baked goods in periwinkle for a day.

Saturday, November 16, 2013

I turned hosting of my church's "coffee talk" into a Pulmonary Hypertension Awareness Month event. Many in the congregation were interested in learning more about PH and shared thanks for bringing awareness with cupcakes!

Friday, November 15, 2013

Just wanted you guys to know that while I've been using Facebook and Twitter to spread awareness this month, a friend of mine has invited me to do an interview live from our local, Broome Community College. He had a class project to do and thought it would be a perfect opportunity to put the spotlight on pulmonary hypertension awareness. The "interview" [aired live on Nov. 7]. Thank you! Going to continue sharing as much information as I can throughout the rest of the month.

This week we ask that you share with your friends, family and beyond this early diagnosis video about the symptoms of pulmonary hypertension and why early diagnosis is so important for PH patients. http://www.youtube.com/watch?v=mo4eSbHjUKo

Technical Details
This is a web based presentation and you will not need to download any software to your computer. If you are accessing the presentation through a mobile device you will need to install the free MegaMeeting Mobile App (available for the iPhone and Android).

For those who will not have computer access or do not have computer speakers, toll free audio will be available by calling 1-877-216-1555. Enter the passcode: 981555. For all others, follow the instructions on the screen when you click the link.

If you have technical questions, please call Jerold Kappel at Southern California Scleroderma office at 310-287-0793 or email socachapter@scleroderma.org.

November is COPD Awareness Month as well as Pulmonary
Hypertension Awareness Month.Learn about pulmonary hypertension (PH) in
the setting of chronic obstructive pulmonary disease (COPD) at this webinar for
patients. Dr. Sonja Bartolome, a pulmonologist from the University of Texas –
Southwestern, will provide an overview of PH symptoms in patients with
respiratory disease, appropriate testing for COPD patients with suspected PH,
and treatments for patients with lung disease-associated PH.

Wednesday, November 13, 2013

Team PHenomenal Hope Leader on Radio Tuesday Team
PHenomenal Hope leader, Dr. Patty George will be featured in a live radio
interview on Tuesday, Nov. 19! If you’re a Sirius radio subscriber, tune in to
the Pulmonology show at 6 a.m. ET, or during the rebroadcast at 4 p.m. ET.

Join Ginny Maril, PhD, on Wednesday, Nov. 13, at 2 p.m. for an
interactive discussion on survivor’s guilt. Dr. Maril, a licensed
psychologist whose clinical and research focus is on patients living
with chronic illness and the well-being of their caregivers, will
provide an overview of how PH patients with survivor’s guilt may feel,
as well as strategies and resources available to help PH patients cope
well through multiple losses.Register now

This past weekend, BreAnn McFarland led a blog hop where a number of her blogger friends posted about pulmonary hypertension for PH Awareness Month. Readers were eligible to win a free zebra digital stamp if they could answer a question about PH. She is also organizing a contest to create something with a periwinkle ribbon somewhere on it and selling PH bracelets. You can read more about BreAnn's passion for art and crafting on our Generation Hope blog.

Monday, November 11, 2013

Help raise money for the cure for pulmonary hypertension on Saturday, Nov. 16. Participants will have the option to do the Six-Minute Marathon or walk a complete mile in solidarity with Team PHenomenal Hope. The blue lips and red straws are being used this year to represent how hard a PH patient has to work to get a breath of air. The event will start at 9:00 a.m. at the Sunrise Baptist Church in Puyallup, Wash.Learn more

We are currently conducting an online survey for caregivers of adult PH patients. The survey only takes 10-15 minutes and will focus on current and future resources available to caregivers. This is your opportunity to tell us what new resources you would like to see here at PHA!

In honor of Veterans Day we’d like to share the face of PH of a veteran by the name of Jim Gebhardt. Jim’s journey began about ten years ago. Not only was he was diagnosed at 61-years-old with chronic thromboembolic pulmonary hypertension, also known as CTEPH, but his condition was considered inoperable due to the distal nature of the disease in both lungs. Fortunately motorcycling was something Jim could keep in his life. Though Jim admits that it is necessary to take extra precautions when dealing with this rare illness, he suggests that if there is something in your life that drives you, that excites you, that makes you want to face each new day, try to maintain that activity. Jim is an inspiration to everyone he encounters. We are proud to have him as a part of our community.Read Jim’s Journey